Sometimes the best decisions and the hardest ones. Grace had a really hard week last week. She really struggled with following instructions and getting along with her peers. The decision had to be made for Christmas. It came down to three choices. One bring her home over night, visit her at the SH on Christmas Day, or Visit her on Christmas Eve.
1. Bring her home for an overnight visit. We were really excited to have this happen. She had been doing great and we all hoped that this would be what would happen. Once we found out she had been having problems we all knew this was in jeopardy. I went down for Grace's monthly staffing meeting to talk about her treatment over the last month. Her team said if we wanted we could still have her over night. Here is where I will sound like the bad guy. I had some very big concerns. Since Grace went into the hospital before being moved to the SH we have only had on site visits with the exception of one off campus visit the day after Thanksgiving. All of our visits have gone well, but they have been short in comparison. Our concerns are that we live over an hour away and if she had any problems we would have no back up. Our only choice would be to call the police. That would be a great lasting memory for Christmas!! Dad said it best when he said Christmas is already an emotional time, weather good or bad its still emotional. Did we really want her very first home visit to be on such a crazy day? Also Brother and Sister and even Me (Mom) are still very guarded with Grace. Before Grace went to the SH everyone walked on eggshells all the time. I don't see her first being much different. Brother and Sister are finally doing really well. Brother has brought all of his grades back up and we finally have a nice calm in our home. If we bring Grace home and she blows up what will that do to Brother and Sister? These were very real concerns. Once I was talking to Grace's treatment team they agreed that these were valid concerns. Finally I asked her team, "If it wasn't Christmas would anyone at this table suggest that Grace is ready for a home visit?" Everyone answered NO!! That had to be our answer. I just cried. I can't imagine waking up to open presents on Christmas morning with out all of my children there.
2. Visit Grace on Christmas day. This was also an option. They even said we could pick her up and do another off grounds visit. My concern was finding somewhere to go on Christmas day would not be easy. Pretty much it would be going to a movie. I don't know if you have ever gone to the movies on Christmas but it is so busy. I didn't think that was a good option. Plus it would mean 3 hours of traveling on Christmas day for All of us. I don't know about you but Brother and Sister weren't very excited to travel that much on Christmas. Also we found out that Grace will be getting Christmas gifts there at the hospital. The staff said it is a really fun day for the kids. Grace was excited once she found that out. Twice as many Christmas gifts. Little turkey.
3. We have decided that the best option is to go and visit Grace for Christmas eve. We will give her all her Christmas gifts and watch her open them. We will open our gifts from her. We will read all our traditional Christmas stories and enjoy as many of our traditions as possible.
The thought of not having Grace home for Christmas is killing me. However I am having to look at the bigger picture. If this was any other time of year this wouldn't even be a choice we would have to make. I am also trying to think of her treatment. I feel like bringing her home right now would be setting her up to fail. I don't think that is fair to her either. I am willing to miss this Christmas if it means she is getting well. I hope that this will be the only Christmas we have to miss for many more years. I hate being the responsible adult right now. It means making the hard decisions and seeming like the bad guy. I know that some people reading this will not agree with or understand the choice that we have made. I only ask that you don't judge. We are in a place that I hope no one else will ever have to be. The choices we are having to make don't just affect Grace but I am having to protect and think of two other children. I know Grace is getting the bast care available for her. I have to fight for Brother and Sister right now.
I hope everyone has a very Merry Christmas and a happy New Year!!!
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